| 词条 | Draft:Brylee Hylka |
| 释义 | {{DISPLAYTITLE:Brylee Hylka}} Brylee Hylka is a little girl born in 2012. She has 11 heart defects. She is a little survivor. She was born then put into the NICU, where she died twice. Here is her full story Brylee Lynn & Brynna Lee are my identical twin girls. Brylee is 1 in 100 babies born with Congenital Heart Defects. Brynna is Heart Healthy. Brylee also has 2 Heart Healthy older brothers: Gavyn is9 & Wyatt is 6. At our 20 week ultrasound, they found Brylee to be smaller than Brynna (IUGR), so they decided to watch them more closely. Two weeks later, they informed us that Brylee had complex congenital heart defects. Our world changed forever. They prepared us for the worst, or tried to. The doctors urged us to consider our options, which was never an option! I lived in fear for my tiny baby girls. Brylee and Brynna were born 2 minutes apart on June 29, 2012. Brylee was purplish-blue, a telltale sign of cyanosis (lack of oxygen in her blood). But she wasn't horribly small, as they'd prepared us for. Brynna decided to give her little sister a gift - a miracle. They develod twin to twin transfusion during their last 2 weeks before birth. Brynna allowed Brylee to have all the food (one twin literally becomes a blood vessel, passing food right along to the other - usually would be a death sentence for Brynna)! Brylee was born 5 ounds 7 unces and 18.9 inches long! (Brynna was 6 pounds 10 oz, 20.5 inches). Our NICU stay was scary. Would she need surgery right away? Would she need those special meds? Brylee was a fighter from day 1. Multiple echos diagnosed a complex combination of Congenital Heart Defects - Double Outlet Right Ventricle, which, in her case, also follows a Tetralogy of Fallot physiology: a Large Subaortic Ventriculoseptal Defect, ASD, Pulmonary Stenosis and possible discontinuous Pulmonary Arteries (several others were found later) . She battled non heart related issues, too, and started and stopped meds. Her doctors decided she was stable, and we were discharged, being told to not let her cry or get excited. Ever. Brylee was followed closely by pediatric Cardiology, with the plan to "let her grow" to around 12 pounds or 4 months, then have her Open Heart Surgery repair. Well, she never got around to growing too well. She had other plans. On Aug 6th, she turned completely blue. The ER turned into an admission, which turned into her 1st Open Heart Surgery, on Aug 14th, at 6 weeks. She was still only 7 pounds. An 8 hour planned surgery turned into 12 hours on bypass. There was a LOT of rerouting & patching; they re-placed her heart in the correct location. They had to discard & replace her Pulmonary valve. There were many complications. Her heart was having electrical problems; they had to place her on a pacemaker. She had collapsed, "angry" lungs (double atelectosis & double pnuemonia). She was on a ventilator for 12 days, then spent another week trying to get off of bipap, cpap & high flow. She spent another 10 days trying to ditch oxygen all together. Her lung disease post 1st OHS, actually rivals her heart defects. A few days post op, they announced she had severe Pulmonary hypertension (a serious disorder of high blood pressure in the blood vessels leading to the lungs). They placed her on Sildenafil (Viagra) to widen her Pulmonary arteries enough to lower blood pressure in the vessels leading to her lungs. Her post op recovery was rough, but she made it. Her lungs seemed her biggest battle until 4 days post op. She coded, developed an extremely high, very unsafe heart rate for hours, and her heart did many unsafe things, & failed to cooperate, despite their life saving attemps (jet, vtach, 2 heart blocks, out of sinus rhythm, pvcs, her pacemaker stopped working, a failed cardioversion...). It was a bad 2 days. She ended up stopping her own heart, scaring everyone, restarting really slow. 30s, 60s, 90s, finally 120s, in sinus rhythm. And, from then on, her heart behaved, pacer free. She endured more than your typical post op recovery (medical comas, being paralyzed, 5 blood transfusions, 3 platelet transfusions, Telemetry studies, a PFO, arrhythmias, infections, a Hypothyroidism diagnosis, withdrawal, hypoglycemia, an infected incision, & rhinovirus). After 36 days, we came home. During all of that time, she developed an aversion to eating. She came home with a tube through her nose to her belly (NG tube), which she insisted on pulling out frequently. She has extreme reflux, so every time we'd bolus her through the NG, she'd throw it up a short while later. The only thing she'd accept, and not at all easily, was breast feeding. And, she WORKED at this. She liked nursing, but she was horribly uncoordinated. Bottles were a nightmare. She'd scream and fight. Brynna was now 6 pounds more than Brylee. It was recommended that she have another surgery, to place a button directly into her stomach (Gastronomy tube) and wrap her stomach so she couldn't reflux anymore (Nissen Fundoplication). So, October 12th found Brylee in the OR and PICU again. She had more complications. She had major internal swelling from her surgery, which complicated her feedings. This time, she was home after 9 days, but was not allowed to eat by mouth (NPO) until her scheduled upper GI finally showed the swelling lessening - 2 weeks later. Brylee had a rough first winter, which landed her in the hospital 4 more times, for respiratory illnesses alone. She was also hospitalized for enterocolitis, sedated echos & a Cardiac MRI. Bronchitis, bronchiolitis & several boughts with pneumonia kept her busy all winter & into spring. All of these respiratory illnesses, coupled with her Pulmonary hypertension, brought to light further cardiac anomalies. After her 16 days in the hospital with pneumonia into April, I knew something new was going on with her little heart. New echos & an extensive MRI showed another CHD: Subvalvar Aortic Stenosis, along with an already failing (but only 8 month old Pulmonary valve - Pulmonary Regurgitation). It became urgent that she have a Cardiac Cath asap. She underwent a 6 hour Balloon Angioplasty Cardiac Catheterization on May 22nd to attempt to balloon inflate her left Pulmonary Artery. It failed. Brylee had to undergo a 2nd Open Heart Surgery on Aug 13th 2013. This surgery was supposed to be slightly less complicated than her 1st OHS, lasting around 4 hours. They were supposed to be replacing her Pulmonary Valve, fixing the thickening muscle that is building up beneath her replaced valve, and enlarging her severely tight (stenosed) left Pulmonary Artery. This OHS ended up lasting 11½ hours. There were complications due to her extensive amounts of scar tissue; it took 3 hours just to get her onto bypass. Upon opening her up, they completely closed her ASD and re-replaced her pulmonary valve. They repaired her Subvalvar Aortic Stenosis. They reconstructed her left Pulmonary Artery (the main branch and the peripheral). They also diagnosed her with another CHD: Tricuspid Regurgitation, so they fixed that, too. She had post op complications, yet again. To find & treat her pneumoia & stah infection inside hr chest avity), 3 more surgeries were performed. Brylee had a Sedated Echocardiogram in June to thoroughly check on her heart. As of now, she's doing great! However, her Pulmonary valve is now a bovine (cow) valve. Time will tell if she destroys or outgrows it first. Either way, there will always be an open heart surgery looming on the horizon. Her cardiologist is scheduled a cardiac MRI for May. A Bronchoscopy with Bronchoalveolar Lavage was performed last April. Her lungs seemed perfect when she was born, but doctors say her lung disease rivals her heart defects now. Brylee routinely receives follow up care with Cardiology for her many CHDs, Endocrinology for her Hypothyroidism, Pulmonary for her lung disease, asthma & atelectosis, Gastroenterology to manage her G Tube care, her reflux & her Failure to Thrive, Nutrition, & Feeding Clinics. Late this fall, her Cardiology team decided she needed another Heart surgery - a cath this time- due to findings on her most recent Echo. She underwent theCatheterization onDecember 21, 2015,which didn't end up benefiting her too much, and is pending her 3rd Open Heart Surgery. Despite everything, Brylee is a happy, active little girl! She now attends Preschool 2 days a week. You'd never know she had ANY of these problems; I promise you! Brylee & I are using her story to spread CHD Awareness. We've written PA's Governor, as well as our city's Mayor, Mayor Muldowney, to receive Congenital Heart Defect Awareness Week Proclamations. For the past couple of years, we've had Feb 7-14th proclaimed CHD Awareness Week in our hometown and state, and we've helped others to do so. We wrote to all of the area's schools, asking them to participate in CHD Awareness Week, and are pleased that several are participating! Brylee's Brave Battle, our Congenital Heart Walk team, is asking friends to join us in walking our4th Congenital Heart Walk, June 5th! If you'd like to learn more about Brylee, visit www.facebook.com/bryleesbravebattle |
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